Join Us - Joseph M. Sanzari Children's Hospital

Tobi's Nurse Navigator

We invite you to join us in our goal to cure children in NJ who are afflicted with Sickle Cell Disease (SCD) by raising a $150,000 fund for a “Nurse Navigator” position at Hackensack University Medical Center (HUMC).  SCD affects over 1000 children in NJ resulting in painful crises, long term organ damage and a life expectancy of less than 50 years. Only a handful of children are cured in NJ each year despite newly available treatments.  We want to improve those numbers by creating a new position at HUMC where we were able to cure our son Tobi of SCD earlier this year.  This new role will help families learn about and take advantage of the curative therapies now available.  We understand the tortuous journey that families need to undergo in order to beat SCD.  A Nurse Navigator will help them on that journey. 

(Goldman Sachs and Google employees, please check the bottom of the page for special instructions)

If you’re on this page, you may know our story. Our son Tobi was diagnosed with SCD in 2017 while we were living in London, UK.  In his 1st year, Tobi was admitted 3 times to the ER for painful crises.  It was heartbreaking to see our baby in pain but we also learned how resilient our son and our family could be. In 2018, while visiting the US, Tobi had another crisis and was admitted to HUMC.  We met the team there and starting discussing the option of a curative Bone Marrow Transplant (BMT).  In 2019, we moved back to the US, started treatment at HUMC and immediately started the long process towards transplant. In 2021, after several rounds of IVF with pre-implantation genetic testing, our second son, Kwasi, was born.  Kwasi matched 11 different genetic markers which made him an optimal donor for Tobi’s transplant.  We started transplant protocol in April of 2022 and after enduring chemotherapy, pain, nausea, fatigue and confinement to a room for 3 weeks…Tobi was declared cured in August! 

Our family has been truly blessed and after confirming Tobi was cured, we immediately started looking for ways to help other families have the same success we had.  So we reached out to our team at HUMC to learn more about the BMT process.  HUMC’s Children’s Hospital is the only center in New Jersey with drug-modifying and curative clinical trials for pediatric SCD.  Thanks to advances in the last 10 years, success rates for BMTs now range from 75-95% depending on donor type when done before age 13.  But many of the families afflicted with SCD are not aware that they have options.  Without our resources, family support, hours of research and constant advocacy, we never would have been able to cure our son. We thought that we might be unique, but in truth, we were simply informed.  We now know that basically any family that wants a BMT can get one.  What is stopping them is a lack of knowledge and the sheer complexity of the process.  They need a guide through the maze. They need a “Nurse Navigator”.

A Nurse Navigator is an innovative new position working towards three goals:

●        Increase Community Education by spending time outside of the hospital in communities with a higher rate of Sickle Cell Disease to educate afflicted populations.

●        Help Navigate Care Within the Hospital by providing support to the patients and families to help them understand treatment options and navigate their treatment journey.

●        Improve Access to Patient Assistance by helping families coordinate their care across physicians, psychosocial support and the insurance companies.

We are confident that this program will lead to curing over 10 children a year. That’s 10+ kids who will no longer have to live with the debilitating pain of sickle cell crisis.  10+ kids who will live full and normal lives. We want others to have the thriving experience that Tobi and us now have. Please donate all you can to help us make this dream a reality!





* If you have a corporate matching program, please take advantage to double your contribution.  Google and Goldman Sachs Employees please contact Folu and Akua when donating as we have set up specific programs with our companies.

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